T5-T6 intramodullary tumor, type unclear

[Ed]

Hi all,

I am new to this forum, and for the last month I have been reading your stories of courage to overcome the pain SCT has caused you. 

I am a 55 years old Swedish citizen. I work as a high school technology teacher. 

In June, 2014, two MRI were carried out on Lumbosacral and the Thoracic Spine. A lesion, most likely a tumor and the hospital doctor thinks is an Astrocytoma, was found in the Thoracic spine (size = 0.4x0.6x1.2 CM in AP, transverse and vertical dimensions, respectively), see attached MRI JPG images. 

I searched the internet and I was lucky to have found this website. Your stories give me hope and courage to face this tumor. Also, thanks to this website I found out about Dr. Jallo and Dr. Kothbauer. I sent MRI CDs to Dr. Jallo and Dr. Kothbauer and both think it is a small benign intramedullary tumor and it might be apendymoma. Dr. Jallo recommended that I see Dr. Kothbauer and to repeat the MRI scans to get better images. I made an appointment with Dr. Kothbauer and will see him in Switzerland on August 18. 

I have also visited a Hospital in Gothenburg, Sweden; however, due to the neurosurgeons heavy workload I was only able to see a neurologist, an appointment will be scheduled to see a neurosurgeon in August. Please inform me if you know of any expert neurosurgeon in Sweden.

I had a car accident in 1985 and I have damage in L4-L5, I have had back pain that extended to my right leg. However, it seems my body healed itself and in the last 10 years I did not feel any pain going down my right leg. Unfortunately, in July 2013 and onward, I started having pain in the lower back and at times I woke up with the lower to the mid back spasm and being twisted in S shape. I changed to a hard mattress and the spasms stopped but the lower back and mid back  pain in the morning when I wake up did not. During this year I have also felt at times: tired, dizzy, funny walk, and forgetful. I would have difficulties recalling words when speaking. I am not sure if these symptoms are tumor related or it has to do with getting old. I have visited Chiropractors science 1985, but now that I have this tumor I am going to think twice before visiting one. 

Now that I am conscious about the tumor and as a result of a horrible and rocky 15 hours train ride 20 days ago, I have localized mid back pain where the tumor is which radiates toward the right side of my mid back; this pain is intensified when I travel in cars, trains and boats traversing rough roads, bad tracks or wavey sea.
 

Should I have the tumor removed? Any suggestions would be appreciated.  


My best wishes to all.
Ed

Attachments:

[Peace and love]

yes you should go for a total resection if possible. Partial resection will not warranty you that pain will be totally disappear, thats why you have to choose the best doctor at your area. If it is ependymoma, it will be easy for resection with less deficits, but if astrocytoma, it will be harder with unpredictable results. I am having a SCT since 5 years and I have the same symptoms as yours while traveling. I keep on postpone for my surgeries and I am suffering from pain, but I feel that I will do it very soon since I am tired from being every day on pain for 5 years. I surrender.



Gooood Luck , all the Best... ;-)

[samuridude]

Hi Ed,



Have they talked to you about radiation treatments in place of surgery? The tumor is small, hope for the best.

[Ed]

Thank you Peace & love, and samuridude for you inputs.

Peace & Love I am sorry to hear about your pain for the last 5 years. If I may ask what type of tumor you have and the location and size of it.

Samuridude, when I met the first neurosurgeon at the hospital that found the tumor he sent me to the oncologist; however, the oncologist said that he has never seen such a tumor and advised me to visit as soon as possible a specialized spinal cord tumor center. I will take your suggestion to the neurosurgeon, Dr. Kothbauer, when I see him next month.

What other questions I should ask Dr. Kothbauer?

Thank you,
Ed

[funnywalk]

Hi there Ed, looking at your MRI, your tumour is still quite small. If it's an ependymoma, it will be separate tissue from the spinal cord, and you might be able to have it removed, with a risk of losing some nerve functions [motor and or sensory]. If it's an astrocytoma, there is a possibility it might have no edges, and be woven into the spinal cord tissue so thoroughly that removal is impossible. I still have mine, but after six weeks of radiotherapy, it has not grown for two years. Good luck with your NS. It is pretty well impossible to tell from a scan exactly what type your tumour is; I felt better once I knew what mine was. If I were you, I would ask:
1/if you remove this completely or partially, what motor nerve loss might I have? [sensory nerve loss is not so crucial, though it can lead to maddening neuropathic pain, but you can still walk, etc.]
2/if it cannot be removed, can my symptoms be treated with medication or with physiotherapy?
3/ How many SCTs have you operated on in your career? [because this condition is so rare, you want a NS with some experience, who won't try the 'heroic' route and cut out valuable spinal cord tissue].
Good luck with your meeting and please let us know how it goes.
funnywalk

[Ed]

Thank you Funnywalk, I like the questions you have suggested and I will ask the doctors when I see them. How did you feel during the six weeks radiothearapy? What side effects did you have as a result? how many sessions did you you have?

I like the idea about radiotherapy. However, for it to be an option the doctor still has to operate to find out the type of tumor I have, correct?

I am still confused about the size of tumors. If my tumor is small, which I am glad it is in a way, then why am I feeling it pressing on my spine and the on going pain symptoms. How large should it be before it should be operated on? Furthermore, I viewed one of Dr. Jallo’s clips on the SCT website and, I think, he said that small tumor pose problem during surgery and he thinks that it might be better if it is a medium size tumor, but what is a medium size tumor? I read somewhere that the spinal cord is one centimeter in diameter. So if the breadth and width of my tumor is 0.4x0.6 CM, then it means that I have about 0.4 or less before it clogs the spinal cord.

Any help inclarifying these issues would be greatly appreciated. I am trying to understand this disease, and the options I am left with.

Best wishes to all, Ed

[lw]

Hi Ed,

Sorry to hear of your diagnosis and welcome to the forum. One thing I have learnt through reading these boards is that everybody's situation is unique and there are many variables when it comes to prognosis. Speaking from personal experience I think I would only have the surgery if I had no option. In 2008 I became virtually paralyzed overnight, all the while continuing to further deteriorate, and so I agreed to the operation as a last resort. To be honest the extent to my disability made the decision easier for me as I could not go on the way I was. You have to weigh up the benefits versus the risks as these are major, invasive operations that are not always successful. I understand from reading your posts that you are in pain, but do you have any neurological deficits? How is your mobility? Hopefully if your tumour is small it hasn't caused too much havoc and should (in theory) be easier to re-sect. You are quite right in saying that the doctors cannot be 100% certain of the pathology until they have carried out a biopsy. Having said that, they do get a pretty good idea of whether the tumour is benign or malignant through analysing the MRI images.

I would strongly echo what the others say about the importance of obtaining expert opinion. See as many neurosurgeons as you need to (if possible) and don't be afraid to ask about any concerns you have. You may not need to have an operation - there are many people on this forum who have had a SCT for years and are being monitored by scans. As I say, I think the most important question to ask is whether the benefits outweigh the risks.

Take care and keep us posted,

Leah

[Ed]

Thank you Leah for the candid response and advice, I have read many of your postings on this website and it has helped me gain a good insight about SCT. You and others have been through a lot and you all are an inspiration and a source of courage to me and others like me.

I don’t have any neurological deficits as of now. However, there is tingling in my left hand thumb and index finger, but it has nothing to do with the tumor. The hospital ran an SEP test and it shows normal, except they had to double the intensity of SEP when testing my right leg, this could be attributed to a car injury I had 20 years ago which cased pain from the sciatica to travel down my right leg. The Neurologist tested my reflexes and thinks they are OK.

I already have a list of questions to ask the NS, and I will post the results of my consultations after I meet the NS. I too agree that surgery would be a last resort and only when neurological deficits become apparent. I can manage the pain with medication. I think I will be placed on the 'watch and wait' list.

Thank you all for welcoming me and for responding to my questions,
Ed

[Peace and love]

Hello again,

Edd you said :

""" this pain is intensified when I travel in cars, trains and boats traversing rough roads, bad tracks or wavey sea """
Could you tolerate this pain by medicine and drugs. If yes please tell me what did you use. For mine I try high doses of many kind of drugs but nothing helped. Finally my doctor told that it is like I close the car door on my finger, Nothing will help from drugs.
I don't know maybe my case is different since my tumor is very big , size is 1.2 cm X 6 cm. Doctors are surprised How I am still walking.
Just want to draw your attention to the side of the tumor. You tumor is from your front side , not back side, this is also very important to check with neurosurgeon on How he will reach it, ask all question you can and please feed us with your info, share it here.

Thanks and have a nice day... Bye

[Ed]

Hi Peace and love,

Apology for the delay in answering your question, and I am really sorry that you have such excruciating pain. I am glad that you can still walk even though you have such a big tumor. If I may ask, what type of tumor is it?

currently, the pain is manageable with medication. If I am home and just being a couch potato, the pain is minimal. However, at night I have to sleep on my right side and in the infant position, or I sleep on my stomach. Also, I get tired at work and being a technology teacher, I have to go around the classroom and bend down to help students with their computer tasks.

As for managing pain, at times I take Advil for pain. I have also been prescribed Paracetamol/codeine 500mg/30mg which I have not used yet. However, when I went on horrible car and train rides this summer, I had to ask my doctor for stronger pills and he gave me Tramadol. I only took on pill but somehow I did not like how it made me feel. Moreover, I am a hyper person with have a heart condition (two stints) and high blood pressure, at times I take Xanax to help me relax and calm down.

I am still new at this and my tumor was only discovered two months ago. I used to treat my back pain by going to the Chiropractor, and when that did not help I used ice packs, and a massage machine called The Thumper. I stopped using the machine after I was diagnosed with tumor. I also swim and take relaxing baths when I can.

Thank you for pointing out the tumor and its location, I had my own suspicions too. I will ask Dr. Kothbauer about it and give feedback on this forum.

Bye and take care, Ed